Why I’ve joined up with Miles for Migraine and Increased My Advocacy

I recently got a flashback of one of  my first posts ever.  It was super exciting to see how far I’ve come and how I’m meeting my goals from  4 years ago.  This post explains how I want to help children and be part of a charity that raises funds for migraine and lowers stigma.

I’m proud to say I’ve found it and I AM saying “Wow, look how far we’ve come.”  If you see me post about Miles for Migraine it’s because I feel strongly that it is making a financial and community difference.

After the 2 races we  participated in, Team My Migraine Life raised $2,192.91.

I was asked to give my patient perspective at both races.  I also donated 9 inches of my hair between this time!  We  raised funds, raised awareness and lowered stigma for migraine.  My children were at both events to hear me speak and are not only learning about their mom at each event but how it affects so many others!  We will be the ones to make change and we will be the ones to pave the way for a less painful stigmatized future.  I’m so proud!

Check out a post I wrote in the first week ever of blogging…..

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To the Dog Who Helped Raise My Kids and Watched My Illness Grow

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I have this picture in my room.  One day, my daughter asked me, “Mom, is that the day you married Lucia?”  My answer was, “No baby, Lucia and I were already together forever.”  You see, my dog and I began it all….

I bought my dog to celebrate my first job out of college.  I had been lonely from leaving my college town and thrust into real life and big responsibilities.  It was love at first sight.  After I brought her to the vet, I was told she would most likely die from Parvo.  That fluffy little ball of fur proved them all wrong.

My Golden Retriever was my life.  She was part of my engagement, watched me get ready for my wedding and moved to an apartment and 2 different homes over time.  She was our first child.

When our first human child arrived, she didn’t feel pushed out.  My sweet dog thought our baby was hers.  She had paced the floors with me and pregnancy insomnia.  She sat with me during round-the-clock feedings.  She was there for me as I had meltdowns about being over tired, over worked, underfed and overwhelmed.  It was years of blurry joy and hustle and she was there through it all.

 

As a stay at home mom with a husband who traveled, Lucia was my constant companion during some lonely times.  I had days where I spoke to no adults.  I spoke to my babies and my dog.  Conversations can be had without words and my dog was always my biggest cheerleader and best friend.  Her tail, ears and eyes spoke volumes to me.

 

There was no better big sister for my humans than Lucia.  She was patient while they played vet and poked her in the eyes.  She was smart when she learned how to stand under the high chair to avoid flying sippy cups while reaping the benefits of fall out food.  She was even ok with squeezing hugs and the occasional ear tasting.  She was sensitive to yelling and was always a reminder for us to use our talking voices.

She was the emotional equalizer.  As I walked into the house with 5 bags on my arms, screaming children chasing behind me from the car and everyday chaos we entered a home of love.  Our Golden Retriever always came running with a stuffed animal in her mouth, a wagging tail, and an attitude that said ”Leave it at the door.”  We all changed when we saw her sweet face.

 

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Do you know those moments before Tick or Treating and everyone is melting down?  I  always had someone to laugh with

 

She put my children to bed every night without fail.  She’d lay on the carpet as I read to one and get up and move to the next room as I did the same.  There was never a night she missed tucking them in.

 

As my oldest became school aged, my dog started picking her up from school.  Everyday when my alarm went off, she went running for the door.  She knew it was time to pick up her girl and go for a car ride.

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Over the years, my dog had 2 knee surgeries, many teeth pulled, growths cut off and more.  Even as she was recovering, she still took care of me.  (link)

As she grew, so did my struggle with migraine.  She became a therapy and emotional dog to me that no one will ever fully understand.  She got to a point that she sensed my pain spikes.  She learned how to comfort me and held my hand very early on and never let go.  Her eyes were always on me.  No matter how many humans we added to our family, I was her number one.

 

Feeling like number one when I give my full self to my family was priceless.  I don’t even put myself first, yet she always did.  She followed me from room to room.  My shadow and my protector.

Over the years we spent countless hours in a cold dark room with my chronic migraine.  There were many nights where I collapsed to the bathroom floor and she slept pressed up against me.  She spent hours unmoving from my bed while I thrashed in pain.  I’d be covered in ice and wiggle my fingers to feel her little kisses on my tips.  She’d do anything to make me feel better and she did.

 

In her last days, our only concern was making sure she wasn’t suffering and that we showed her all the love that she provided for us over the years.  I had a vet once tell me, “Goldens will wag their tails and eat until 3 days after they die just to please their owners.”  On her last day, she did just that.  We bought her lots of treats and threw her an early 13th birthday.  She wagged her tail and cuddled us while we knew it was time for her to go.  She knew and her eyes told us so.

Saying goodbye was, without a doubt, the most gut-wrenching moments of my life.  I feel so blessed that it was in her best interest, we didn’t allow her to suffer, she went without panic and pain.  As I laid with her, I felt God take my best friend, my four-legged soul mate, my first child and migraine warrior.

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The days after, I saw her everywhere.  I heard her everywhere.  I felt her everywhere.  My son was sick and I was trapped in my house and grieved over every hair, nose smeared window and inch of my house.  My house was no longer the home I was at ease in.

She went to God on May 8th.  On May 11th my turtle of 20 years passed away.  He has lived in my family room of every home I’ve had since I was a teenager.  My pets passing away in 3 days was extreme! The numbers 8 and 11 are hugely relevant.  I was born on 8/11.  My favorite numbers have always been 8 and 11 along with being my numbers in sports and more.  It was not a coincidence that these were the dates they went to the rainbow bridge.

A week exactly from the day we said goodbye to Lucia my baby boy graduated preschool.  I thought it would feel totally different, but it just felt like a tremendous loss.  I’ve dedicated my life to my children and animals  and it just felt like everyone was leaving me.   It was as if my pets were saying, “We started this family and raised your babies and now it’s time”.  It felt like an end of an era and one I was not ready to say goodbye to.

I’ve heard the phrases:

  • Our pets don’t live long enough
  • When it rains it pours
  • You’ll never get over her but someday it will hurt less

I’ve been told to get another dog not to replace my four-legged soul mate, but to find another love.

I’ve been told that another dog can learn to be a therapy or emotional support dog too.

Here’s my answer to all of this:

This next dog will have a distinct difference from Lucia.

  • My family belonged to Lucia. We started it all!  I was her number one.  Our children were hers.
    • The next dog will belong to them. They will see her as their childhood dog when I will forever know Lucia as the dog who gave my babies joy and me sanity.
  • Lucia watched my migraine become chronic and she evolved as my therapy and emotional dog.
    • The next dog will hopefully see me get better. Her focus won’t solely be on me.  She is coming into an already made family and connections will be totally different.
  • There will never be another being on this earth that can complete me.  Right now I feel this painful hole in my body that physically hurts with every breathe.
    •  With Lucia went a piece of me that I will miss forever.  Yes, I will love another dog, but I know I won’t get that piece back.  She will be missed each day! I know it will get easier but everyone has been honest with me in saying, it will never go away.

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Is it OK to Get a Medal When You Don’t Win but Feel Like a Winner?

Another year, another Miles for Migraine walk completed.  Last year I participated virtually and received a medal for my participation.  This year, I was at the race and again received a medal.  I wasn’t a winner in either race (although I was the top fundraiser and team My Migraine Life was also so I consider that a win!!!).

It begs the question, are participation trophies ok?  Here is my answer 

What do you think?

National Puppy Day 2018

Happy National Puppy Day!  Every year I post a picture of my dog.  She is my nurse, my therapy, my medicine and my first child.  As I was locked in my room with a 3 day Migraine from hell, guess who slept beside me?  Guess who kept me company in the middle of the night while the pain was raging?  My dog.  She’ll always be my puppy!  My almost 13 year old puppy!

 

Here’s more on her endless love and support:

How we doctor my dog and she doctors me

My dog with Migraine. Therapy, service, comfort, support and treatment. Pets can help heal

National puppy day 2017

Rockwell Pets Pro review of natural dog shampoo

National dog day

Thankful list 2017 On My Migraine Life

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Thank you to those who showed gratitude in November on My Migraine Life.  I am so thankful to have a community of supporters and those I can support throughout the year.  We may suffer a lot but we appreciate the things in life that make us better.

Happy Thanksgiving to you all!  May it be filled with health, gratitude, and many blessings!

Here are some comments you made:

  1. “Thankful for friends, family, a safe place to live and ability to pay my bills.
  2. For this group.
  3. Thankful for modern medicine
  4. Laughter
  5. I live for the pain-free moments of laughter with family and friends!!
  6. When pain level is low enough to be functional
  7. I am thankful that I am able to still keep a job that I love and be a good mommy to my kids
  8. Thankful for my family, my jobs, and my animals!
  9. I am so thankful for my amazing husband who allows me to tag out when I need to lay down and take care of myself. And for his willingness to work past exhaustion to take care of me and our family when I cannot “pull my weight” during times of pain.
  10. I’m thankful for my amazing and supportive husband. I’m also thankful for the awesome support system I have at work! Without my husband and my work family my life would be awful.
  11. I’m thankful for my amazing husband and children who support me every single day and for my beautiful family of migraine warriors!
  12. I am thankful for your blog! I do not like having “this thing” in common with anyone….but am thankful that you can put into words what I often can’t…or won’t.
  13. I am thankful to live in a city of doctors and options.
  14. I am thankful for a long list of relatives that share in our unfortunate disease, but not all at such a high level.
  15. I am thankful for my husband, who from day one has understood me, and what the future holds with my health, and has never flinched, never questioned, never judged.
  16. I am thankful for my children, good lord are they a blessing, God’s greatest gift to me by far.
  17. I am thankful for my energetic children, who give me a reason to muddle through my painful fog, even though sometimes I’d rather hide in bed.
  18. I want to thank My Migraine Life for your post on being a mom with a migraine.  You are right it takes a village to raise a kid.  That’s why God gave us the ability to ask for help.   But reading that other moms felt like I did was wonderful.  So thank you and I pray that your message touches other people like it did me.
  19. I feel blessed in many ways and could write a very long list, but the big one I will share is that I am thankful my migraines and headaches are not as frequent as so many others who have to deal with them so regularly.  Because I know how painful and debilitating from life they are, I am amazed at the strength that you and so many others have in not only “getting through the day” but kicking ass doing it.
  20. I woke up today, I’m thankful for that.
  21. I’m thankful to be finding community here, too. I’ve struggled with migraines for years, tried a variety of meds and elimination diets without very good results. It’s so helpful to find understanding, optimistic peers! I’m looking into a headache hat and a new pair of glasses this month, thanks to you!
  22. I am thankful for so many things I can’t name them all, so I am very thankful & although I may not have the best of everything I am blessed
  23. Thank you for this post.
  24. I am thankful for my wonderful husband who puts up with a house that’s not always clean, listens to me when I’m frustrated with doctors or treatments that don’t work, and doesn’t care that I don’t cook (lol).
  25. I’m thankful for my two grown children and 6 beautiful grandchildren.
  26. I’m thankful that I have two best buddy dogs that snuggle when I need it and keep me entertained when I’m stuck in my house for days on end.
  27. I’m thankful I woke up today even though the moment I woke up my headache knocked on my brain.
  28. I’m thankful for communities like this one that is a place of kindness and support.
  29. I’m thankful for today despite the challenges.
  30. I’m thankful for people like you that make me feel less alone in this struggle with chronic headaches.
  31. Like others have already said – I’m thankful for finding your blog, and this post especially.
  32. Love reading this blog and hearing how inspiring you are. “

Thank you to all who chose to take time out of your day to give thanks and share with My Migraine Life community.  I am inspired by all your kind words and strive to make this blog the community, support system, and positive place it is.  Migraines are painful, being a mom is overwhelming and life is chaotic.  May we all find strength and take each day at a time hopefully towards health and happiness!

Happy Thanksgiving, my friends!!!

Why I’m thankful, grateful and blessed the day after a Migraine

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This has been a tough weekend for me.  Friday I spend all day in bed and rode out a level 8+ pain level for over 5 hours as just part of my day fighting Migraine.  It was one of those day……

Along with all the people I listed in my Thankful post, yesterday I was simply thankful that I could leave my room.  Not many people understand the isolation of being chronically sick and the literal battle that is done within one’s self.

Yesterday I felt like a super hero for just being able to leave my room.  Small victory for most but for those of us who understand…..a reason to be THANKFUL!

Please continue to add to my list on how your are thankful, grateful and blessed.  Just setting the intention of finding something positive in each day may change your outlook altogether.   Comment here on the blog, on facebook, twitter or Instagram.  You don’t need to have migraine to comment.  Everyone should find gratitude in their day!

13 ways to survive working with Chronic Illness

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I have been a full time teacher with Chronic Migraine.

I have been a full time stay at home mom with Chronic Migraine. 

I am a full time mom and part time teacher with Chronic Migraine. 

They all are difficult jobs and adding a chronic illness makes life even more complicated and difficult.  

So the questions remains, how do you work while having Chronic Migraine?  How was I able to return to work

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  • Work part time

I only work a few days a week and seem to have letdown migraines on my days off.  I save time for self-care during those day.

Tip: Know time off policies and if a substitute is available

  • Find coworkers who support you

At my job that I missed a lot of time off, my boss was arrogant and my coworkers were judgmental.  With my new job, my coworkers are like a supportive family and my boss is loving and understanding.  This benefits the group because I’m not motivated to work out of judgment or consequences but out of commitment and love for the job and workers I call friends. I really have fun at work and love to be there.

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  • Ask for and learn how to accommodate your needs 

I requested that my classroom be on the side of the building that does not get direct sun or heat.  I also have control over the lighting.  Heat and lights (fluorescent) are especially big triggers.  I use Axon Optics glasses on days I need extra light protection for my eyes.  I use other lotions, oils and natural products to treat myself topically.

  • Understand clients

I found that when I disclosed that I had Chronic Migraine to my boss at one job I was judged and at my current job she understood me better.  The same goes for clients.  As a teacher who was missing work, I sent home a letter explaining my chronic disease.  I found that the parents were very open and appreciated my honesty but I was unsure what the feedback would be.  Understanding the children and families I work for has allowed me to personally connect more.  I feel like my families want the best for me as I want the best for them and mutual respect once again motivates me.

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  • Low stress, high reward

With a part time position, my stress has decreased tremendously.  I am able to focus on myself, my family and other aspects of my life other than my job.  Stress was my main factor in turning episodic to chronic.  I now have a handle on how to deal with stress and my priorities are different.  As a teacher without children and now with children, my views on teaching are very different. I have always had a passion for teaching and love children.  The reward is huge!!!  Being someone who is making a difference every day and seeing growth in my students is so rewarding. 

It gives me pure joy and joy is great medication! Find joy in your job.

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  • Set realistic goals and expectations

Putting pressure on myself to be something I’m not only raises stress.  I have realistic ideas of what I can do, what I want to do and how I’m going to attain those goals.  Setting myself up for failure will only derail my treatment.  I set goals I know I can reach and am proud when I meet them.  A positive attitude and learning from the past allows me to move forward.

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  • Commute

Driving is extremely difficult with even a low grade migraine.  At my old job I had a longer commute and found that many days I was throwing up on the side of the road before and after work.  At times I liked it to decompress but most of the time was pained from the drive.  I now have a short drive that I can drive to with my eyes closed (don’t worry, I don’t but I could).

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  • Water, coffee and snacks

Caffeine can be a benefit or trigger.  Coffee  is beneficial to my migraines. During my morning of teaching, I drink coffee before the students arrive and drink a huge water bottle throughout my day.   As a class, we have scheduled potty breaks and snack time so we all get time to refuel. 

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  • Sleep schedule

I wake up the same time every day whether I’m working or not.  I stay on a consistent sleep schedule in order to be refreshed and ready for my day.

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  • Take breaks

When I feel a migraine raising, I get a bit panicked.  During my students specials I have the ability to take a break, focus, drink more coffee, or water.  Just allowing 10 minutes of quiet and focused breathing make a world of difference to my rising pain.

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  • Use flexible work time if possible

I am able to get a lot of my work done outside of the classroom.  I am also a busy mom and find that planning and prepping can be done once they go to bed.  Instead of staying late at school, I bring a lot of my work home and also plan ahead.  By being over prepared I am able to relieve stress.  If I’m sick in bed and worrying about work, I get sicker.  When I have everything done, being sick for days doesn’t stress me out about work because I know I’m prepared.  Planning and being prepared makes my life, in general, much easier.

  • Moving my body and distraction

There are days I go to school feeling sick and am completely consumed by my students.  The minute my students leave and all is quiet, the pain comes flooding back.  I’m so distracted and filled with endorphins while I’m at school that at the end of the day I’m punished more.  There have been days that I work till lunch and am in bed until the next day.  The distraction of a job that I love helps me get through many mornings.

Having a job that I am active in helps.  Stretching, dancing and moving keeps my body active.  I would not be unable to sit at a desk staring at a screen all day.  My body needs to move and my brain needs a break from technology.

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  • Money vs time

As a part time employee in the teaching field, you can imagine I’m not a millionaire.  Working salary and full time was not something I could keep up with.  Working part time, I do not make a lot of money but am able to do what I love with people I care for.  Sometimes money isn’t everything (although it pays for my medical expenses, so I really need it).

 

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 With all of this said, I found a dream job.  Not everyone gets to work part time (either financially or in their field of interest).  Disability is difficult to get as a migraine sufferer and most jobs it is difficult to find balance.  Time off isn’t always possible without consequences and substitutes are not common. Falling behind on work is inevitable.  Finding coworkers that are friends is not a choice but a lucky draw.  The same goes for bosses.

All circumstances and lives are different.  I encourage you to find something you love.  Find a part time job, a job online, a job that can be flexible and a job that makes you happy.  Migraine is the definition of pain and unhappiness…..find something you love and makes you better.  Easier written than done, I know!!!

I, honestly, was not sure if I’d ever be able to go back to teaching with how severe my disease is.   I took a chance and it paid off.  I was very aware that it may not be possible, but I never let that deter me.  I tried it and it worked.  Not every job works but I’m so glad I took that leap.

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